The Land of Topsy Turvy

Firstly thank you SO MUCH for the massive outpouring of love and support I received after my last meltdown post. As you all know, I pretty much insist that if I am going to put it out there, I am going to be true to the experience and not sugar coat anything, but that is not to say that sometimes I don’t worry I have gone too far, and I should keep the horror of me punching on with walls and having to be kept from the knife drawer to myself. Unfortunately though, anger (ok, rage), frustration, discomfort and terror are very much a part of the reality of terminal cancer, and although many of you reading do not have to live it (and thank fuck for that), I am moved that you can be brave enough to sit by me during these times.

I’d love to tell you I have had a complete turn around in attitude and I was in full fighting mode again. Unfortunately, I am not, it’s taking longer this time, but I have finally woken up this morning with the feeling that I may be able to find the energy to start swimming again. You know I love my analogies, so, at the moment it is like being in one of those swim spas, where you flail your arms about madly to stop banging into the end, but you don’t actually GET anywhere. I feel like I am expending a huge amount of energy at the moment just to stay in the same place, just to stay in the game, just to keep breathing. I am frequently physically exhausted, constantly emotionally exhausted.

A few weeks ago a woman contacted me and said she would like to come and make a movie of me spending some time with the girls, just us doing things we do…hanging out in bed, playing with the dog, going to the park, that sort of thing. When I saw an example of her work, a sublime collection of clips set to music, that seemed to completely capture the essence of the family she had filmed, I knew i wanted to do this, so I accepted gratefully. A couple of days ago, she arrived from Brisbane to spend a day and night with us. I found myself in quite a difficult place, as i didn’t want any of it to be contrived, I wanted the real joy that the girls and I take from our time together to be captured, without me having to “turn it on”……but fuck me, all this is so hard…she was there to capture footage of us that the girls can watch when they MISS ME and want to see me walking and talking and breathing and being with them again…..footage for them to watch when I am DEAD. There is no way that the reason that she was here could be lost on me.

To my relief it all transpired quite naturally. She captured us as we all piled into the family bed with the dog, and laughed and snuggled. She captured us as I tucked the kids into bed and read a bit from one of their favourite Roald Dahl books (he was a favourite of mine, too). We got up the next morning and decided to head for the park, so I tried to get ready, but I was exhausted again…it was a Herculean effort for me to even brush my teeth. It was 12 degrees outside and I started sweating…which really is a sign that your liver is struggling. I thought about two people I have visited in palliative care, Gaz’s ex-wife Nola and my friend Deb. Both had sweat pouring out of their faces as I did and both very near the end of their lives. And so, I started to entertain the possibility that this was the beginning of the end. Because you see, I am back in no ,mans land – I don’t KNOW. I could be getting worse and this new chemo can’t arrest the development of the tumours. The new chemo could be working and my liver is working overtime to rid my body of the toxic by-products of the chemo (this particular chemo is extremely liver toxic and it is trying to shrink tumours in my liver….crazy scenario)…once again I would give anything for a crystal ball, while at the same time acknowledging that I could well be better off NOT knowing.

And so, by the time we got to the park yesterday I was in a not good place again. The kids ran excitedly around the park, and I sat with our new friend Georgia and tried to find the energy to get up and frolic about with them, so that Georgia’s camera could capture us having fun…..god, we used to have so much fun. I sat there and watched my kids…other peoples kids….the heady hum of LIFE, but I couldn’t feel it. Usually this sort of thing would be an impetus, something to feed the rage within that this was MY world too, I was a mum, I was no less entitled to the innocent joy of that than any other mum in the park that had not had to know the horrors that I have faced in the last 21 months. By god I would fight for this as long as I could, even if it meant forever having to live every day in the knowledge that my time with them is short.

But, not yesterday. I couldn’t channel the rage. Instead, I felt something truly frightening. Total acceptance of my fate, and the surety that while we sat there in the freezing cold, I would never know another summer. I looked at my children and felt….nothing, and I wondered if this is how life prepares you for death without a descent into complete madness…but shutting you down emotionally, detaching you completely. I can honestly say I never felt something as frightening as that, while at the same time being less afraid than I ever was.

We didn’t stay long at the park. Georgia could see I wasn’t feeling it and wasn’t going to, so we went and got some lunch and headed home. Then, we headed outside to get some final footage before Georgia had to head back to Brisbane. We all piled onto the trampoline, definitely exceeding the weight limit. Because I was the heaviest, all the children were sliding into me, and we began to laugh – really laugh. Not even an hour had elapsed since the shitstorm in my head that was going on at the park, and I was laughing. These here are crazy times.

We went and sat on the steps near the cubby and I had snuggle time with each child for Georgia to film. Tana sat on my knee, leaned in close for a smooch…stuck her tongue in my mouth and then farted long and loud, like a good Watson. By golly, we were in HYSTERICS. I started talking about getting the paint out that I bought for the cubby last year and never used, and turning it into a girls clubhouse…..a bench seat, lots of comfy cushions, some bookshelves. Shabby chic….vintage….somewhere they can go together, or retreat to when they want time alone. It was a small plan, but a good one. I want to create this clubhouse for them. I want to live to see how hot it will get in summer.

A visit to my oncologist yesterday afternoon further improved my mood. He didn’t seem alarmed or surprised with how I have been feeling. I told him about my psycho meltdown and told him that he didn’t need to call the CAT team, I am just TIRED. So.fucking.tired.of.it. I have a feeling he has seen this sort of thing before, and instead of despairing for my mental health, we talked about balancing the need for steroids to give me the lift to get through the worst days of chemo, and the need in me not to take them due to the rage and lack of sleep. Always trying to find balance, always trying to find a happy medium. He told me I could give up chemo at any time, I always had a choice, but we know what that choice means, and we agreed that neither he, nor I felt we were close to that yet. I could tell that he had not given up on me, and in fact we talked about it not being unusual for this chemo regime to work for a couple of years, and how it was generally well tolerated long after that first line becomes intolerable for the body. Scan after cycle 4, and I hope, I genuinely do, to feel the sun on my face, and the warmth on my back again.

When I was a child I was very fond of Enid Blyton books, and the Magic Faraway tree series was my favourite. Sometimes Jo, Dick and Fanny and Silky and Old Moon Face and the Saucepan Man happened on some truly terrible lands at the top of the tree. Sometimes they were full of malevolent spells, sometimes they were just damned annoying, like the land of Topsy Turvy, where everybody had to walk around on their hands. Imagine how much energy it would take to walk around on your hands….to find the energy to live, all.the.time in a way that is totally unnatural to you, and always will be. But the fact is that you can learn to live in another way, when you realise that you are much changed, and you accept the change, but not the outcome. When you realise that there is always the potential for a rollicking good land to arrive at the top of the tree.

Much love, and hope, as always, to those who need it. I’ll leave you with this photo of my friend Meg and I. Meg has been a supporter of my blog for as long as I can remember…we were bought together by both being Catherine Deveny’s Gunna’s, and we finally met when she came to my Brisbane book launch. Meg has been up against stage 4 cancer for much longer than me, she’s an incredible woman – it was such a joy to finally meet her. There is not much that is good in cancer, but gosh, the people I have met….amazing!

Check you all soon….from a much better place, I think. I’m getting there xxx

13 Comments on “The Land of Topsy Turvy”

I’ve been reading your blog for a little while, but not commented before. THANK YOU for sharing your life so openly and honestly. You write beautifully, it is raw and real.
I’m glad your girls will have those videos forever – and there’s nothing like a good fart to get a laugh happening! I’m reading the magic faraway tree to my four year old at the moment – it’s just not the same now they’ve made Fanny “Frannie” and Dick “Rick”. Ridiculous.
all the best to you with your continuing treatment and getting the most out of life. xx

Oh Julia I always read your posts and am inspired by them but I think I might have to turn a blind eye for a while. It is 10 days since learning of my diagnosis of pancreatic cancer. It’s all too raw.
I am with you in spirit and may peek in every now and then. I send you love and hugs

oh my god Julie, I am so sorry. Please feel free to facebook friend me privately if you would like to chat and then you don’t have to read my blog but can talk to me if need be. Fuck cancer, this sucks.

Thanks so much Julia. I will do that.
that’s very kind of you, are you sure you have time?
I have a bottle around my neck today. Copycatting my favourite Warrior Woman – 1st day of chemo started today and radiation starts tomorrow. I shall fb you. xx

Your emotional honesty is a pure delight, even if the events you are experiencing are not. I love how you can be all levels of feeling – the raging madwoman, the caring mother, the exhausted woman and the hopeful heart as well as the accepting wise woman all in one day.You are in the midst of s storm and it is no wonder you are so emotionally exhausted. It’s ok. Be yourself, we love you xx

Wow. Once again you inspire me. Keeping up with four young children is a mission in its own right. I did not realise the sweating was the livers way of trying to cope with toxins. Now i understand my own sweats that happen randomly, it’s either that or early on set menopause. Just completed treatment number 4 and had CT scan. Waiting for results from oncologist. Hoping for positive news….. Stay strong but allow yourself days to chill out and rest you deserve it xx.

Nothing about this raw pain is okay, except that it might give your more time to feel the sun on your back and there is no greater reward. It’s okay to rant, rage and everything in between because I’m sure this helps with the fight. I love the idea of video stories. Voice is so powerful, it’s been four years since my lovely dad passed away and my mum still can’t bring herself to change their voicemail at home. I remember in the early days she used to phone herself at home just to hear his voice. I remember vividly calling one day and getting the message and couldn’t help myself and left a message that I knew where he was but where in the hell are you mum. She said she laughed so much when she got home. Hugs from afar to you and your very caring other half.

Jules, I was in the midst of packing and moving when I started to read this and then got interrupted. Just got back to it now because I wondered how your post ended. Your writing is like that – a slice of life that just can’t be put down. Honest, hilarious and dangerous and scary all rolled into one. XXXXX

Dear Julia,
Just yesterday I sat down for a long overdue watching of my recorded 60 Minutes shows, and I saw your story. I was moved on so many levels and I am very keen to connect with you, for a number of reasons. Firstly, I send you all the strength I possibly can on the back of fairy wings, for you to continue the fight, as much as you can, for as long as you can. Your beautiful girls, Georgia, Dakota, Indiana and Montana and your wonderful fella Gary, obviously bring you much love and support, at such a difficult time. You also clearly have a very dear friend in Kerrie. I have been though a different trauma which has also transported me to a place of self acceptance and self love. I have struggled with being kind to myself for 47 years, I intend to do the rest of my life better and teach others around me, the absolute need to F.L.Y – first love yourself. I am currently starting a program aimed at empowering girls to carry self love through their teenage years and onto adulthood, so life is kinder under their control. I would very much like to either speak with you, or email you in a private manner, should you care to offer some of your very precious time. Your words “I’ve always lived my life worrying about what other people think of me” is exactly what I have felt and what has held in back from living my life to it’s fullest. I wish others to not waste the opportunity to live happily. Thank you Julia (p.s. – I’m a Juls also, just with an e)!